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Determinants of quality of life decrease in family caregivers of care-dependent patients: a longitudinal study

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Marcus Luciano de Oliveira Tavares, Adriano Marçal Pimenta, Cristina García‐Vivar, Mark Anthony Beinner, Lívia Cozer Montenegro

Caring for a dependent relative can quietly reshape the caregiver’s entire life. This study followed families over time to ask a crucial question: what makes that decline worse, and what helps protect against it?

Abstract

Purpose Family caregivers of care-dependent patients experience a decline in their Quality of Life (QoL). However, the determinants contributing to this decrease in QoL are still not fully understood. Therefore, this study aimed to estimate pro­ spectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients. Methods This longitudinal study involved 135 family caregivers in Brazil. Data were collected at baseline from October 2016 to August 2017, and at follow-up from December 2021 to July 2022. During both periods, we administered a question­ naire that covered sociodemographic, health, and lifestyle characteristics of the participants; the Barthel Index to assess the dependency level of the patients; and the WHOQOL-bref to assess the caregivers’ QoL. Results Both caregivers and care-dependent patients were more frequently elderly (44.4% versus 74.6%), female (79.3% versus 61.5%), and had non-communicable disease (60.0% versus 94.3%) at baseline. Most patients experienced a worsen­ing in their level of dependency (59.8%), while over a third of family caregivers (34.8%) reported a decline in their General Quality of Life Index. Eight determinants of decreased QoL were identified: four protective factors (religious faith, physical activity, sharing caregiving responsibilities, and sufficient sleep) and four risk factors (patient hospitalization in the past year, patient increased care dependency, older family caregiver age, and longer caregiving duration). Conclusion Many factors influencing caregiver QoL are modifiable through intervention, underscoring the need for public policies to support family caregivers. Healthcare professionals can play a vital role in promoting protective factors and addressing risk factors to enhance caregiver QoL.

Transcript

Caring for a dependent relative can quietly reshape the caregiver’s entire life. This study followed families over time to ask a crucial question: what makes that decline worse, and what helps protect against it? Family caregivers of care-dependent patients experience a decline in their quality of life.

However, the factors contributing to this decrease are still not fully understood. The study therefore aimed to identify the factors contributing to decreased quality of life among family caregivers of care-dependent patients.

Earlier studies made it difficult to establish cause and effect. A study that follows people over time can show which factors diminish or improve caregivers’ quality of life. Those findings can guide policymakers and healthcare practitioners in creating support that reduces the negative effects of caring for someone who depends on others.

The study aimed to identify, over time, the factors contributing to decreased quality of life among family caregivers of care-dependent patients. The study followed caregivers prospectively, looking for the factors associated with declining quality of life among those caring for patients who depended on others.

The study examined changes in caregivers’ quality of life over time. The change was found by comparing the later score with the earlier score, then sorting caregivers into those whose quality of life decreased, stayed the same, or increased. For the main comparison, those whose quality of life stayed the same or increased were grouped together and compared with those whose quality of life decreased.

When caregivers’ quality of life was compared at the beginning and later follow-up, it had declined across all four quality-of-life areas as well as overall. So the change was not limited to one part of life; the decline appeared across the areas measured.

A patient’s hospitalization within the previous year was linked to a higher risk of decreased caregiver quality of life, as was a worsening in the patient’s level of dependence. Older caregiver age was also identified as a contributing risk factor. Having religious faith and sharing caregiving responsibilities were identified as protective factors.

The protective factors included religious faith, shared caregiving responsibilities, physical activity, and sufficient sleep. The risk factors included hospitalization in the past year, increased care dependency, older caregiver age, and longer caregiving duration. The findings should be generalized beyond the studied population with caution because the region was specific and some people dropped out over time.

The results should be interpreted cautiously because the specific region and dropouts may affect outcomes, and comparisons with other studies require sensitivity to differing assessment tools. Caregiver well-being fell as patients became more dependent, but shared responsibility, faith, activity, and enough sleep were linked with better outcomes.

Support for caregivers is part of patient care, not an optional extra.

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